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J Nurs Care Qual Vol. 30, No. 3, pp. 247–253 c 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright
Quality of Hospice Care Comparison Between Rural and Urban Residents Marianne Baernholdt, PhD, MPH, RN, FAAN; Cathy L. Campbell, PhD, RN; Ivora D. Hinton, PhD; Guofen Yan, PhD; Erica Lewis, PhD, RN Discrepancies between needed and received hospice care exist, especially in rural areas. Hospice care quality ratings for 743 rural and urban patients and their families were compared. Rural participants reported higher overall satisfaction and with pain/symptom management. Regardless of geographic location, satisfaction was higher when patients were informed and emotionally supported. Patients and family ratings did not differ. Findings support prior reports using retrospective rather than our study’s point-of-care surveys. Key words: family, hospice care, patient satisfaction, quality care, rural health
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N 2011, a total of 1.65 million people in the United States received hospice care and 44.6% of patients were under the care of a hospice provider at the time of death; still, more than 1 million people each year who could have benefitted from hospice care die without receiving it.1 Hospice care is un-
Author Affiliations: School of Nursing, Virginia Commonwealth University, Richmond (Dr Baernholdt); School of Nursing (Drs Campbell and Hinton) and Department of Public Health Sciences (Dr Yan), University of Virginia, Charlottesville; and Department of Nursing, James Madison University, Harrisonburg, Virginia (Dr Lewis). This work received funding from the Lanford Grant, University of Virginia (Drs Baernholdt and Campbell), K01NR0105556 (Dr Baernholdt), and 3R01CA12270403S1 NIH/NCI (Dr Campbell). Dr Yan is supported in part by 5R01DK084200-02 NIH/NIDDK. The authors declare no conflict of interest. Supplemental digital content is available for this article. Direct URL citation appears in the printed text and is provided in the HTML and PDF versions of this article on the journal’s Web site (www.jncqjournal.com). Correspondence: Marianne Baernholdt, PhD, MPH, RN, FAAN, School of Nursing, Virginia Commonwealth University, 1100 East Leigh St, PO Box 980567, Richmond, VA 23298 ([email protected]). Accepted for publication: November 4, 2014 Published ahead of print: December 30, 2014 DOI: 10.1097/NCQ.0000000000000108
derutilized despite availability of more than 5300 hospice programs in a variety of settings: freestanding (57.5%), part of hospital systems (20.3%), home health agencies (16.8%), or nursing homes (5.2%).2 Patients in rural communities are especially vulnerable to receiving inadequate hospice care. A multitude of factors, including less hospice provider access, challenges delivering hospice care, characteristics of the rural populations, and beliefs about hospice care and the quality of such care, can explain the discrepancy between needed and received hospice care in rural communities.3–9 Rural communities have less access to hospice care programs.3 In 2008, 98% of US residents lived within 60 minutes driving time to at least 1 hospice.10 However, for states with a high proportion of rural residents, for example, North Dakota and South Dakota, more than 10% of their population lived farther than 60 minutes driving time from a hospice. Moreover, driving time does not equate service area or access to hospice. Some hospice programs have a limited catchment area that may not include rural areas. Furthermore, rural counties are less likely to have at least 1 Medicare-certified hospice program than urban counties.4 Challenges delivering hospice care for rural programs include geography, resources, 247
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and staff education and retention. Geographical challenges in rural areas consist of unpredictable access to patient homes due to weather, topographical features, poorly maintained roads, and long distances between homes.5 Resource challenges include financial constraints. With fewer financial resources, fuel costs impact frequency of visits. Furthermore, there may be fewer resources such as medications and equipment in local pharmacies and health supply stores.5,6 Finally, lack of education for staff about hospice care and low retention of hospice staff create serious challenges to delivering hospice care in rural communities.6,7 Characteristics of the rural populations are also reasons for discrepancy between needed and received hospice care. Compared with their urban counterparts, rural communities may have higher needs for hospice care, as they have higher proportions of people who are older than 65 years with multiple comorbidities.4 Furthermore, rural residents are poorer and therefore may not seek care because of cost. With 22.7% of the rural population living on government transfer payments compared with 13.7% in urban areas, more rural patients and families struggle to pay for medications, equipment, and supplies.5,7 Finally, patient and family beliefs about hospice care can contribute to underutilization of hospice care in rural communities.11 Rural residents may not be aware that hospice care is available. Because scarcity of medical resources is often the norm in rural communities, it may not occur to patients and families to explore if hospice care is offered.9 Furthermore, patients and their families may equate hospice care with death and therefore not seek hospice care until very late in the dying process.9 Finally, patients and their families may be reluctant to seek hospice care if they perceive their hospice provider does not deliver quality care. Low levels of coordination and communication among hospice providers and less standardized assessment tools, care plans, and charting mechanisms have been reported in rural communities.11 The national focus on quality of hospice care has increased since 2008 when the Cen-
ters for Medicare & Medicaid included hospice care in its initiatives to improve health care quality. To receive reimbursement from the Centers for Medicare & Medicaid, hospice programs are required to have quality assessment and performance improvement initiatives.12 Further, the National Quality Forum has endorsed 14 quality indicators for hospice care.1 These quality indicators address care outcomes, such as communication about patient’s condition, plan of care, symptom management, and psychosocial support, but the indicators do not include outcome measures that evaluate actual results of care.13−15 In contrast, the National Hospice and Palliative Care Organization’s (NHPCO’s) Family Evaluation of Hospice Care (FEHC) survey examines family satisfaction with hospice care. The FEHC is part of the NHPCO’s national performance improvement program whereby hospices that submit data to NHPCO receive quarterly benchmark reports with state and national comparisons.16 The FEHC does not include patients’ opinions, however, as the survey is distributed postmortem. A few studies have compared family and patient ratings of satisfaction, with mixed results.17,18 To our knowledge, there are no studies that compare quality of hospice care in rural and urban areas and include data collected from both patients and families. The aim of the present study was to examine whether perceptions of quality of hospice care differed in rural and urban areas and between patients and families. METHODS The study is guided by the Quality Health Outcomes Model (QHOM). The QHOM is based on Donabedian’s model of structure, process, and outcomes, which has provided a framework for the evaluation and comparison of health care quality since the 1960s.19,20 The QHOM depicts the interrelationships between the system, interventions, patient characteristics, and outcomes. The QHOM was adapted for the current study to evaluate hospice care quality. Consistent with mandates to link hospice interventions with patient/family outcomes,12 the QHOM
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Quality of Hospice Care depicts how hospice interventions affect hospice outcomes through system or patient characteristics. We conceptualize the system characteristics as geographic and care location; the hospice interventions are whether the following care was provided: explanation of plan of care, information about patient’s condition, and emotional support; patient characteristics include race/ethnicity, primary diagnosis, and relationship to the patient; and hospice outcomes are overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management. Using both patient and family respondents, this study assessed specific hospice interventions that are associated with hospice outcomes in rural and urban areas. Data sources and study population We used a convenience sample of patients admitted to 1 large hospice program in the southeastern United States from September 1, 2009, to April 30, 2010. The hospice organization’s service area was divided into 7 areas, where each had a home visit team and an inpatient facility. The organization had an average daily census of 630 patients/families, with about 25% of their population in rural areas. As part of its quality assessment, the hospice organization had the same staff member conduct a 5- to 10-minute survey of all patients and/or adult family/significant others 4 to 10 days after admission. For this study, the survey was modified to include patients’ zip code and satisfaction questions for care interventions related to pain management and other symptom management for a total of 13 questions. For the 8-month study period, the research team received monthly de-identified patient-level data. Measures System characteristics were measured as geographic and care location. These variables were extracted from admission forms. Geographic location was defined as rural or urban. From the patients’ residential zip code, we extracted the county codes from the Centers for Disease Control and Prevention.21 We then merged the county codes with the
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Economic Research Service’s rural/urban continuum codes to determine rural or urban location.22 Codes 1 to 3 were designated urban and codes 4 to 9 rural. Care location was either at home or at an inpatient hospice unit. Patient characteristics had 3 variables. Race/ethnicity was white, African American, or other. Primary diagnosis was cancer or noncancer. Both were extracted from the admission form. The individual who answered the survey questions described his or her relationship to the patient as self, spouse, adult child, or other. Hospice interventions included 3 binary variables, explanation of plan of care, information about patient’s condition, and emotional support, which were all measured as whether an intervention had been provided or not. Hospice outcomes included 3 binary variables: overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management. All 3 variables measured whether the person who answered was satisfied with the hospice care or not. Data analysis Descriptive summaries were created using percentages and frequencies and then compared according to geographic location using the χ 2 test. For cell sizes less than 5, the Fisher exact test was used. We used logistic regressions to first examine univariate associations between variables and each hospice outcome and then multivariate associations including all significant variables. Since our aim included geographic location and relationship to the patient, these 2 variables were included in all multivariate models. Because of collinearity between the 3 hospice interventions, we included them one at a time for 3 separate models. All analyses were done using SPSS, version 18.0 (IBM Corp, Armonk, New York). RESULTS A total of 743 (331 rural and 412 urban) surveys were included in the study. During the study period, 2073 patients were admitted to the hospice but 621 died before they could be
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surveyed, 617 patients could not be reached or did not want to participate, and 92 surveys either were duplicates (n = 24) or had missing data (n = 68). In both rural and urban areas, 67% of admitted patients received hospice care at home (see Supplemental Digital Content, Table, available at: http://links.lww. com/JNCQ/A147). Compared with patients in urban areas, rural patients were significantly more likely to be white (90%) and less likely to be African American (7.9%). For both rural and urban areas, slightly more than half of the patients had a noncancer diagnosis and the respondent was least likely to be the patient (16.3%) and most likely to be an adult child, followed by the spouse and other. The 3 hospice interventions had been provided 89.8% to 94.9% of the times, with information about patient’s condition scoring lowest in urban areas and emotional support scoring highest in rural areas. Overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management were rated positive 93.2% to 99.4% of the times. For overall satisfaction, there were only 3 patients in rural areas who were not satisfied, so the Fisher exact test was used and produced a significant difference. Since overallsatisfaction had only 3 rural patients who were not satisfied, we did not include logistic regression results. In univari-
ate analyses, satisfaction with pain management was associated only with 2 interventions, information about patient’s condition and emotional support, whereas satisfaction with other symptom management was associated with all 3 hospice interventions. Care location, race/ethnicity, primary diagnosis, and relationship to patient were not associated with any of the hospice outcomes. In the final multivariate logistic regression models (Table), the 2 hospice outcomes were consistently more likely to be rated higher if 1 of the 3 hospice interventions were in place. For the outcome satisfaction with pain management, only the intervention explanation of plan of care was not significant; whether the patient or others were surveyed was not significant. For the 2 hospice outcomes, rural location was approaching significance (pain management odds ratio = 1.54; P = .19; symptom management odds ratio = 1.97; P = .06). While the outcome, overall satisfaction, did not meet the assumption of more than 5 cases per cell, when we performed logistic regression, all 3 care interventions were significant as was rural location. DISCUSSION Satisfaction with hospice care was high in both rural and urban areas. This finding is
Table. Multivariate Logistic Regression for Hospice Outcomes (N = 743)a Odds Ratio (95% CI) Satisfaction With Pain Management System characteristics Geographic location Rural vs urban Patient characteristics Relationship to patient Self vs all others Hospice intervention Explanation of plan of care Information about patient’s condition Emotional support
Satisfaction With Other Symptom Management
1.54 (0.81-2.93), P = .19
1.97 (0.98-3.95), P = .06
1.21 (0.5-2.94), P = .67
0.76 (0.34-1.7), P = .51
1.67 (0.57-4.9), P = .35 6.08 (2.99-12.33), P< .001 3.73 (1.62-8.62), P< .001
3.08 (1.21-7.83), P = .018 7.12 (3.45-14.73), P< .001 5.94 (2.68-13.2), P< .001
a Hospice
interventions were included one at a time in all models. Results for geographic location and relationship to patient are from the model that included these 2 variables and the hospice intervention explanation of plan of care.
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Quality of Hospice Care consistent with high satisfaction ratings of hospice and palliative care services found in the literature.23–25 In this study, rural patients and families rated their overall satisfaction so high that we were unable to perform robust logistic regressions. Thus, the lack of resources often found in rural areas either were not present or did not influence patient and family satisfaction with hospice care in this study.5,26 Perhaps, the high ratings can be contributed to the rural community connectedness.26,27 Hospice providers can more quickly get the services their patients need because they have a personal relationship with the other providers within the community.8 Rural nurses plan highly individualized care, and they go beyond their allotted hours to ensure patients receive best care.8 Finally, in rural communities, neighbors tend to be conscious of each other’s needs and help out if necessary.8 Satisfaction with hospice care did not differ between patients cared for in their home or in an inpatient hospice unit. In this study, patients were served by a large hospice, which has been operating in both rural and urban areas for many years. The rural communities know their hospice providers, and the hospice is recognized for providing high-quality care. For many rural areas, this type of provider is not available. Although both hospice utilization and the number of providers have increased from 2000 to 2009, the increase in providers was the highest in urban areas (62% increase and 31%, respectively).28 Therefore, many rural patients may be sent out of their community to an urban area when their care needs demand inpatient admission.26 Not being around people they know may result in lower inpatient satisfaction. The high satisfaction ratings with pain and other symptom management suggest that the hospice providers were able to treat symptoms quickly after admission to hospice. With at least 1 visit, the hospice care team was able to address symptoms satisfactorily for more than 90% of the patients. Our ratings are better than previously reported satisfaction with symptoms management reduction between 2
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visits. For pain management, a reduction from moderate/severe to mild/none was reported by 56% of patients, and for other symptoms management (dyspnea, depression, and constipation), a reduction was reported by 54% to 65% of patients.29 All 3 interventions, explanation of plan of care, information about patient’s condition, and emotional support, were associated with higher ratings of satisfaction from patients and families. This confirms other findings using the FEHC where family members rated overall satisfaction higher if they were informed about the patient’s medical treatment, were provided regular information about the patient’s condition, and felt the hospice team provided emotional support.30 In our study, there were no significant differences between patient and family satisfaction. Other studies have also found that patients and families view hospice care quality similarly.31 In contrast, a previous study found that patients were less likely to be satisfied with overall hospice care than other respondents.18 One should note that as in any survey, there is a potential bias because the patient population only represents patients willing and able to participate in the survey. Patients’ ability to participate may be impaired as they go through the dying process.30,31 Nonetheless, perceptions of both patients and families should be included when planning hospice care and measuring quality. Race/ethnicity did not influence satisfaction in this study. In a retrospective study, African American families were less satisfied than white families.24 The number of patients and families within each race/ethnicity category, however, is different in our study. Our sample had both more white (85.2%) and African American (11.6%) patients than the 2010 national averages of 77.3% and 8.9%, respectively.2 Perhaps, the aforementioned longevity of the hospice provider also has a positive effect on possible disparities related to race/ethnicity. Just as might be the case in the rural communities, this hospice provider is a known entity in the African American community and therefore used and trusted to provide quality care.
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Limitations Our study had several limitations. We used a convenience sample of hospice patients and their families, with a higher proportion of rural patients (45%) than the 25% of rural patients in the population the hospice serves. Our results therefore may not reflect the perceptions of the population served. Furthermore, more than half of the patients admitted to this hospice and therefore eligible to be in the study died, could not be reached, or declined participation. The large proportion of patients who died before they were reached indicates that our population pursued hospice care late in the dying process, which unfortunately is not unusual. Also, it should be noted that we had less variability in this sample of 743 patients and families than expected. Only 4% to 9% of participants had not received hospice interventions or were dissatisfied with the hospice outcome. Therefore, we were unable to report robust results from one outcome, overall satisfaction with hospice care, and some of our confidence intervals are large. Nevertheless, our statistically significant findings are valid, as they are based on the 95% confidence intervals that do not cross 1 (P< .05). Future studies with larger sample sizes are needed to confirm these results. Another limitation relates to generalizability. The hospice program in this study had an average census of 630 patients per day. In contrast, the median average daily census in 2011 was 71.2 Furthermore, with a quarter of their population in rural areas, this hospice is a large provider in rural communities. Studies including a variety of hospice providers in both rural and urban areas are warranted to validate or dispute our results. Finally, our
study considered only geographic and care location as contextual factors. Other contextual factors and their relationships to interventions and outcomes are important to consider when examining quality.32 CONCLUSION Our results have implications for practice, policy, and research. To provide high-quality care, hospice providers need to ensure that they use all 3 interventions: explanation of plan of care, information about patient’s condition, and emotional support. These interventions are not unique to hospice care but are especially important for end-of-life care where patients and families have to come to terms with the approaching death of a loved one. In rural communities, hospice providers also need to pay attention to and include the informal networks surrounding patients and their families. At the policy level, our results demonstrate potential for support of integration of measures from point-of-care systems collection methods that can help guide ongoing quality monitoring. Together with retrospective surveys, meaningful benchmark reports on interventions and hospice outcomes can be produced for regulatory and payment purposes. Future research should include other hospice interventions and outcome as well as what aspects of living in a rural area may explain the higher satisfaction with hospice care found in this study. Finally, researchers should include open-ended questions for addressing problems as they occur and for further qualitative analyses, which will aid in development of patient- and familycentered interventions and measurements, to ensure hospice quality care.
REFERENCES 1. National Quality Forum. Endorsement summary: palliative care and end-of-life care measures. http:// www.qualityforum.org/News_And_Resources/Press_ Releases/2012/NQF_Endorses_Palliative_and_End-ofLife_Care_Measures.aspx. Updated February 12, 2012. Accessed September 22, 2013. 2. National Hospice and Palliative Care Organization.
2012 NHPCO facts and figures: hospice care in America. http://www.nhpco.org/sites/default/files/ public/Statistics Research/2012 Facts Figures.pdf. Updated 2012. Accessed October 18, 2013. 3. Lynch S. Hospice and palliative care access issues in rural areas. Am J Hosp Palliat Care. 2013;30(2):172177.
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Quality of Hospice Care 4. Campbell CL, Merwin E, Yan G. Factors that influence the presence of a hospice in a rural community. J Nurs Scholarsh. 2009;41(4):420-428. 5. Artnak KE, McGraw RM, Stanley VF. Health care accessibility for chronic illness management and endof-life care: a view from rural America. J Law Med Ethics. 2011;39(2):140-155. 6. Campbell CL, Boyer DE, Campbell LC, Rovnyak V. Pain management topics of interest for nurses in rural Appalachia. J Contin Educ Nurs. 2012;43(6):267-276. 7. Armstrong B, Jenigiri B, Hutson SP, Wachs PM, Lambe CE. The impact of a palliative care program in a rural Appalachian community hospital: a quality improvement process. Am J Hosp Palliat Care. 2013;30(4):380-387. 8. Robinson CA, Pesut B, Bottorff JL, Mowry A, Broughton S, Fyles G. Rural palliative care: a comprehensive review. J Palliat Med. 2009;12(3):253-258. 9. Volandes AE, Ferguson LA, Davis AD, et al. Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: a randomized controlled trial. J Palliat Med. 2011;14(2):169-177. 10. Carlson M, Bradley E, Qingling D, Morrison RS. Geographic access to hospice in the united states. J Palliat Med. 2010;13(11):1331-1338. 11. Robinson CA, Pesut B, Bottorff JL. Issues in rural palliative care: views from the countryside. J Rural Health. 2010;26(1):78-84. 12. Centers for Medicare & Medicaid Services. Conditions of participation. http://www.cms.gov/Medicare/ Medicare-Fee-for-Service-Payment/Hospice/index. html?redirect=/hospice. Updated 2013. Accessed September 28, 2013. 13. Schenck AP, Rokoske FS, Durham DD, Cagle JG, Hanson LC. The PEACE project: identification of quality measures for hospice and palliative care. J Palliat Med. 2010;13(12):1451-1459. 14. Heyland DK, Frank C, Tranmer J, et al. Satisfaction with end-of-life care: a longitudinal study of patients and their family caregivers in the last months of life. J Palliat Care. 2009;25(4):245-256. 15. Heyland DK, Cook DJ, Rocker GM, et al. The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian health care evaluation project (CANHELP) questionnaire. Palliat Med. 2010;24(7):682-695. 16. National Hospice and Palliative Care Organization. Family evaluation of hospice care (FEHC). http:// www.nhpco.org/performance-measures/familyevaluation-palliative-care-fepc. Accessed November 22, 2013. 17. Engelberg RA, Downey L, Wenrich MD, et al. Measuring the quality of end-of-life care. J Pain Symptom Manage. 2010;39(6):951-971. 18. Campbell CL, Baernholdt M, Yan G, Hinton ID, Lewis E. Racial/ethnic perspectives on the quality of hospice care. Am J Hosp Palliat Care. 2013;30(4):347353.
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19. Mitchell PH, Ferketich S, Jennings BM. Quality health outcomes model. American academy of nursing expert panel on quality health care. Image J Nurs Sch. 1998;30(1):43-46. 20. Mitchell PH, Lang NM. Framing the problem of measuring and improving healthcare quality: Has the quality health outcomes model been useful? Med Care. 2004;42(2)(suppl):II4-II11. 21. Centers for Disease Control and Prevention. CDC Wonder. Scientific data documentation. County cross reference file (FIPS/ZIP4). http://wonder.cdc.gov/ wonder/sci data/codes/fips/type txt/cntyxref.asp. Updated February 2009. Accessed May 22, 2010. 22. US Department of Agriculture. Economic Research Service. Rural-urban continuum codes. http://www. ers.usda.gov/data-products/rural-urban-continuumcodes.aspx. Accessed May 22, 2010. 23. York GS, Jones JL, Churchman R. Understanding the association between employee satisfaction and family perceptions of the quality of care in hospice service delivery. J Pain Symptom Manage. 2009;38(5):708716. 24. Rhodes RL, Teno JM, Connor SR. African American bereaved family members’ perceptions of the quality of hospice care: lessened disparities, but opportunities to improve remain. J Pain Symptom Manage. 2007;34(5):472-479. 25. Fernandes R, Braun KL, Ozawa J, Compton M, Guzman C, Somogyi-Zalud E. Home-based palliative care services for underserved populations. J Palliat Med. 2010;13(4):413-419. 26. Robinson CA, Pesut B, Bottorff JL. Supporting rural family palliative caregivers. J Fam Nurs. 2012;18(4): 467-490. 27. Baernholdt M, Jennings BM, Merwin E, Thornlow D. What does quality care mean to nurses in rural hospitals? J Adv Nurs. 2010;66(6):1346-1355. 28. Medicare Payment Advisory Commission (MedPAC). Report to Congress: Medicare Payment Policy. Chapter eleven11: Hospice Services. Washington, DC: MedPAC; 2012:281-308. 29. Bull J, Zafar SY, Wheeler JL, et al. Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice. J Palliat Med. 2010;13(8):10131020. 30. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008;35(4):365371. 31. McPherson CJ, Addington-Hall JM. Judging the quality of care at the end of life: can proxies provide reliable information? Soc Sci Med. 2003;56(1):95-109. 32. Ovretveit JC, Shekelle PG, Dy SM, et al. How does context affect interventions to improve patient safety? An assessment of evidence from studies of five patient safety practices and proposals for research. BMJ Qual Saf. 2011;20(7):604-610.
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J Nurs Care Qual Vol. 30, No. 3, pp. 247–253 c 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright
Quality of Hospice Care Comparison Between Rural and Urban Residents Marianne Baernholdt, PhD, MPH, RN, FAAN; Cathy L. Campbell, PhD, RN; Ivora D. Hinton, PhD; Guofen Yan, PhD; Erica Lewis, PhD, RN Discrepancies between needed and received hospice care exist, especially in rural areas. Hospice care quality ratings for 743 rural and urban patients and their families were compared. Rural participants reported higher overall satisfaction and with pain/symptom management. Regardless of geographic location, satisfaction was higher when patients were informed and emotionally supported. Patients and family ratings did not differ. Findings support prior reports using retrospective rather than our study’s point-of-care surveys. Key words: family, hospice care, patient satisfaction, quality care, rural health
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N 2011, a total of 1.65 million people in the United States received hospice care and 44.6% of patients were under the care of a hospice provider at the time of death; still, more than 1 million people each year who could have benefitted from hospice care die without receiving it.1 Hospice care is un-
Author Affiliations: School of Nursing, Virginia Commonwealth University, Richmond (Dr Baernholdt); School of Nursing (Drs Campbell and Hinton) and Department of Public Health Sciences (Dr Yan), University of Virginia, Charlottesville; and Department of Nursing, James Madison University, Harrisonburg, Virginia (Dr Lewis). This work received funding from the Lanford Grant, University of Virginia (Drs Baernholdt and Campbell), K01NR0105556 (Dr Baernholdt), and 3R01CA12270403S1 NIH/NCI (Dr Campbell). Dr Yan is supported in part by 5R01DK084200-02 NIH/NIDDK. The authors declare no conflict of interest. Supplemental digital content is available for this article. Direct URL citation appears in the printed text and is provided in the HTML and PDF versions of this article on the journal’s Web site (www.jncqjournal.com). Correspondence: Marianne Baernholdt, PhD, MPH, RN, FAAN, School of Nursing, Virginia Commonwealth University, 1100 East Leigh St, PO Box 980567, Richmond, VA 23298 ([email protected]). Accepted for publication: November 4, 2014 Published ahead of print: December 30, 2014 DOI: 10.1097/NCQ.0000000000000108
derutilized despite availability of more than 5300 hospice programs in a variety of settings: freestanding (57.5%), part of hospital systems (20.3%), home health agencies (16.8%), or nursing homes (5.2%).2 Patients in rural communities are especially vulnerable to receiving inadequate hospice care. A multitude of factors, including less hospice provider access, challenges delivering hospice care, characteristics of the rural populations, and beliefs about hospice care and the quality of such care, can explain the discrepancy between needed and received hospice care in rural communities.3–9 Rural communities have less access to hospice care programs.3 In 2008, 98% of US residents lived within 60 minutes driving time to at least 1 hospice.10 However, for states with a high proportion of rural residents, for example, North Dakota and South Dakota, more than 10% of their population lived farther than 60 minutes driving time from a hospice. Moreover, driving time does not equate service area or access to hospice. Some hospice programs have a limited catchment area that may not include rural areas. Furthermore, rural counties are less likely to have at least 1 Medicare-certified hospice program than urban counties.4 Challenges delivering hospice care for rural programs include geography, resources, 247
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and staff education and retention. Geographical challenges in rural areas consist of unpredictable access to patient homes due to weather, topographical features, poorly maintained roads, and long distances between homes.5 Resource challenges include financial constraints. With fewer financial resources, fuel costs impact frequency of visits. Furthermore, there may be fewer resources such as medications and equipment in local pharmacies and health supply stores.5,6 Finally, lack of education for staff about hospice care and low retention of hospice staff create serious challenges to delivering hospice care in rural communities.6,7 Characteristics of the rural populations are also reasons for discrepancy between needed and received hospice care. Compared with their urban counterparts, rural communities may have higher needs for hospice care, as they have higher proportions of people who are older than 65 years with multiple comorbidities.4 Furthermore, rural residents are poorer and therefore may not seek care because of cost. With 22.7% of the rural population living on government transfer payments compared with 13.7% in urban areas, more rural patients and families struggle to pay for medications, equipment, and supplies.5,7 Finally, patient and family beliefs about hospice care can contribute to underutilization of hospice care in rural communities.11 Rural residents may not be aware that hospice care is available. Because scarcity of medical resources is often the norm in rural communities, it may not occur to patients and families to explore if hospice care is offered.9 Furthermore, patients and their families may equate hospice care with death and therefore not seek hospice care until very late in the dying process.9 Finally, patients and their families may be reluctant to seek hospice care if they perceive their hospice provider does not deliver quality care. Low levels of coordination and communication among hospice providers and less standardized assessment tools, care plans, and charting mechanisms have been reported in rural communities.11 The national focus on quality of hospice care has increased since 2008 when the Cen-
ters for Medicare & Medicaid included hospice care in its initiatives to improve health care quality. To receive reimbursement from the Centers for Medicare & Medicaid, hospice programs are required to have quality assessment and performance improvement initiatives.12 Further, the National Quality Forum has endorsed 14 quality indicators for hospice care.1 These quality indicators address care outcomes, such as communication about patient’s condition, plan of care, symptom management, and psychosocial support, but the indicators do not include outcome measures that evaluate actual results of care.13−15 In contrast, the National Hospice and Palliative Care Organization’s (NHPCO’s) Family Evaluation of Hospice Care (FEHC) survey examines family satisfaction with hospice care. The FEHC is part of the NHPCO’s national performance improvement program whereby hospices that submit data to NHPCO receive quarterly benchmark reports with state and national comparisons.16 The FEHC does not include patients’ opinions, however, as the survey is distributed postmortem. A few studies have compared family and patient ratings of satisfaction, with mixed results.17,18 To our knowledge, there are no studies that compare quality of hospice care in rural and urban areas and include data collected from both patients and families. The aim of the present study was to examine whether perceptions of quality of hospice care differed in rural and urban areas and between patients and families. METHODS The study is guided by the Quality Health Outcomes Model (QHOM). The QHOM is based on Donabedian’s model of structure, process, and outcomes, which has provided a framework for the evaluation and comparison of health care quality since the 1960s.19,20 The QHOM depicts the interrelationships between the system, interventions, patient characteristics, and outcomes. The QHOM was adapted for the current study to evaluate hospice care quality. Consistent with mandates to link hospice interventions with patient/family outcomes,12 the QHOM
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Quality of Hospice Care depicts how hospice interventions affect hospice outcomes through system or patient characteristics. We conceptualize the system characteristics as geographic and care location; the hospice interventions are whether the following care was provided: explanation of plan of care, information about patient’s condition, and emotional support; patient characteristics include race/ethnicity, primary diagnosis, and relationship to the patient; and hospice outcomes are overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management. Using both patient and family respondents, this study assessed specific hospice interventions that are associated with hospice outcomes in rural and urban areas. Data sources and study population We used a convenience sample of patients admitted to 1 large hospice program in the southeastern United States from September 1, 2009, to April 30, 2010. The hospice organization’s service area was divided into 7 areas, where each had a home visit team and an inpatient facility. The organization had an average daily census of 630 patients/families, with about 25% of their population in rural areas. As part of its quality assessment, the hospice organization had the same staff member conduct a 5- to 10-minute survey of all patients and/or adult family/significant others 4 to 10 days after admission. For this study, the survey was modified to include patients’ zip code and satisfaction questions for care interventions related to pain management and other symptom management for a total of 13 questions. For the 8-month study period, the research team received monthly de-identified patient-level data. Measures System characteristics were measured as geographic and care location. These variables were extracted from admission forms. Geographic location was defined as rural or urban. From the patients’ residential zip code, we extracted the county codes from the Centers for Disease Control and Prevention.21 We then merged the county codes with the
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Economic Research Service’s rural/urban continuum codes to determine rural or urban location.22 Codes 1 to 3 were designated urban and codes 4 to 9 rural. Care location was either at home or at an inpatient hospice unit. Patient characteristics had 3 variables. Race/ethnicity was white, African American, or other. Primary diagnosis was cancer or noncancer. Both were extracted from the admission form. The individual who answered the survey questions described his or her relationship to the patient as self, spouse, adult child, or other. Hospice interventions included 3 binary variables, explanation of plan of care, information about patient’s condition, and emotional support, which were all measured as whether an intervention had been provided or not. Hospice outcomes included 3 binary variables: overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management. All 3 variables measured whether the person who answered was satisfied with the hospice care or not. Data analysis Descriptive summaries were created using percentages and frequencies and then compared according to geographic location using the χ 2 test. For cell sizes less than 5, the Fisher exact test was used. We used logistic regressions to first examine univariate associations between variables and each hospice outcome and then multivariate associations including all significant variables. Since our aim included geographic location and relationship to the patient, these 2 variables were included in all multivariate models. Because of collinearity between the 3 hospice interventions, we included them one at a time for 3 separate models. All analyses were done using SPSS, version 18.0 (IBM Corp, Armonk, New York). RESULTS A total of 743 (331 rural and 412 urban) surveys were included in the study. During the study period, 2073 patients were admitted to the hospice but 621 died before they could be
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surveyed, 617 patients could not be reached or did not want to participate, and 92 surveys either were duplicates (n = 24) or had missing data (n = 68). In both rural and urban areas, 67% of admitted patients received hospice care at home (see Supplemental Digital Content, Table, available at: http://links.lww. com/JNCQ/A147). Compared with patients in urban areas, rural patients were significantly more likely to be white (90%) and less likely to be African American (7.9%). For both rural and urban areas, slightly more than half of the patients had a noncancer diagnosis and the respondent was least likely to be the patient (16.3%) and most likely to be an adult child, followed by the spouse and other. The 3 hospice interventions had been provided 89.8% to 94.9% of the times, with information about patient’s condition scoring lowest in urban areas and emotional support scoring highest in rural areas. Overall satisfaction, satisfaction with pain management, and satisfaction with other symptom management were rated positive 93.2% to 99.4% of the times. For overall satisfaction, there were only 3 patients in rural areas who were not satisfied, so the Fisher exact test was used and produced a significant difference. Since overallsatisfaction had only 3 rural patients who were not satisfied, we did not include logistic regression results. In univari-
ate analyses, satisfaction with pain management was associated only with 2 interventions, information about patient’s condition and emotional support, whereas satisfaction with other symptom management was associated with all 3 hospice interventions. Care location, race/ethnicity, primary diagnosis, and relationship to patient were not associated with any of the hospice outcomes. In the final multivariate logistic regression models (Table), the 2 hospice outcomes were consistently more likely to be rated higher if 1 of the 3 hospice interventions were in place. For the outcome satisfaction with pain management, only the intervention explanation of plan of care was not significant; whether the patient or others were surveyed was not significant. For the 2 hospice outcomes, rural location was approaching significance (pain management odds ratio = 1.54; P = .19; symptom management odds ratio = 1.97; P = .06). While the outcome, overall satisfaction, did not meet the assumption of more than 5 cases per cell, when we performed logistic regression, all 3 care interventions were significant as was rural location. DISCUSSION Satisfaction with hospice care was high in both rural and urban areas. This finding is
Table. Multivariate Logistic Regression for Hospice Outcomes (N = 743)a Odds Ratio (95% CI) Satisfaction With Pain Management System characteristics Geographic location Rural vs urban Patient characteristics Relationship to patient Self vs all others Hospice intervention Explanation of plan of care Information about patient’s condition Emotional support
Satisfaction With Other Symptom Management
1.54 (0.81-2.93), P = .19
1.97 (0.98-3.95), P = .06
1.21 (0.5-2.94), P = .67
0.76 (0.34-1.7), P = .51
1.67 (0.57-4.9), P = .35 6.08 (2.99-12.33), P< .001 3.73 (1.62-8.62), P< .001
3.08 (1.21-7.83), P = .018 7.12 (3.45-14.73), P< .001 5.94 (2.68-13.2), P< .001
a Hospice
interventions were included one at a time in all models. Results for geographic location and relationship to patient are from the model that included these 2 variables and the hospice intervention explanation of plan of care.
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Quality of Hospice Care consistent with high satisfaction ratings of hospice and palliative care services found in the literature.23–25 In this study, rural patients and families rated their overall satisfaction so high that we were unable to perform robust logistic regressions. Thus, the lack of resources often found in rural areas either were not present or did not influence patient and family satisfaction with hospice care in this study.5,26 Perhaps, the high ratings can be contributed to the rural community connectedness.26,27 Hospice providers can more quickly get the services their patients need because they have a personal relationship with the other providers within the community.8 Rural nurses plan highly individualized care, and they go beyond their allotted hours to ensure patients receive best care.8 Finally, in rural communities, neighbors tend to be conscious of each other’s needs and help out if necessary.8 Satisfaction with hospice care did not differ between patients cared for in their home or in an inpatient hospice unit. In this study, patients were served by a large hospice, which has been operating in both rural and urban areas for many years. The rural communities know their hospice providers, and the hospice is recognized for providing high-quality care. For many rural areas, this type of provider is not available. Although both hospice utilization and the number of providers have increased from 2000 to 2009, the increase in providers was the highest in urban areas (62% increase and 31%, respectively).28 Therefore, many rural patients may be sent out of their community to an urban area when their care needs demand inpatient admission.26 Not being around people they know may result in lower inpatient satisfaction. The high satisfaction ratings with pain and other symptom management suggest that the hospice providers were able to treat symptoms quickly after admission to hospice. With at least 1 visit, the hospice care team was able to address symptoms satisfactorily for more than 90% of the patients. Our ratings are better than previously reported satisfaction with symptoms management reduction between 2
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visits. For pain management, a reduction from moderate/severe to mild/none was reported by 56% of patients, and for other symptoms management (dyspnea, depression, and constipation), a reduction was reported by 54% to 65% of patients.29 All 3 interventions, explanation of plan of care, information about patient’s condition, and emotional support, were associated with higher ratings of satisfaction from patients and families. This confirms other findings using the FEHC where family members rated overall satisfaction higher if they were informed about the patient’s medical treatment, were provided regular information about the patient’s condition, and felt the hospice team provided emotional support.30 In our study, there were no significant differences between patient and family satisfaction. Other studies have also found that patients and families view hospice care quality similarly.31 In contrast, a previous study found that patients were less likely to be satisfied with overall hospice care than other respondents.18 One should note that as in any survey, there is a potential bias because the patient population only represents patients willing and able to participate in the survey. Patients’ ability to participate may be impaired as they go through the dying process.30,31 Nonetheless, perceptions of both patients and families should be included when planning hospice care and measuring quality. Race/ethnicity did not influence satisfaction in this study. In a retrospective study, African American families were less satisfied than white families.24 The number of patients and families within each race/ethnicity category, however, is different in our study. Our sample had both more white (85.2%) and African American (11.6%) patients than the 2010 national averages of 77.3% and 8.9%, respectively.2 Perhaps, the aforementioned longevity of the hospice provider also has a positive effect on possible disparities related to race/ethnicity. Just as might be the case in the rural communities, this hospice provider is a known entity in the African American community and therefore used and trusted to provide quality care.
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Limitations Our study had several limitations. We used a convenience sample of hospice patients and their families, with a higher proportion of rural patients (45%) than the 25% of rural patients in the population the hospice serves. Our results therefore may not reflect the perceptions of the population served. Furthermore, more than half of the patients admitted to this hospice and therefore eligible to be in the study died, could not be reached, or declined participation. The large proportion of patients who died before they were reached indicates that our population pursued hospice care late in the dying process, which unfortunately is not unusual. Also, it should be noted that we had less variability in this sample of 743 patients and families than expected. Only 4% to 9% of participants had not received hospice interventions or were dissatisfied with the hospice outcome. Therefore, we were unable to report robust results from one outcome, overall satisfaction with hospice care, and some of our confidence intervals are large. Nevertheless, our statistically significant findings are valid, as they are based on the 95% confidence intervals that do not cross 1 (P< .05). Future studies with larger sample sizes are needed to confirm these results. Another limitation relates to generalizability. The hospice program in this study had an average census of 630 patients per day. In contrast, the median average daily census in 2011 was 71.2 Furthermore, with a quarter of their population in rural areas, this hospice is a large provider in rural communities. Studies including a variety of hospice providers in both rural and urban areas are warranted to validate or dispute our results. Finally, our
study considered only geographic and care location as contextual factors. Other contextual factors and their relationships to interventions and outcomes are important to consider when examining quality.32 CONCLUSION Our results have implications for practice, policy, and research. To provide high-quality care, hospice providers need to ensure that they use all 3 interventions: explanation of plan of care, information about patient’s condition, and emotional support. These interventions are not unique to hospice care but are especially important for end-of-life care where patients and families have to come to terms with the approaching death of a loved one. In rural communities, hospice providers also need to pay attention to and include the informal networks surrounding patients and their families. At the policy level, our results demonstrate potential for support of integration of measures from point-of-care systems collection methods that can help guide ongoing quality monitoring. Together with retrospective surveys, meaningful benchmark reports on interventions and hospice outcomes can be produced for regulatory and payment purposes. Future research should include other hospice interventions and outcome as well as what aspects of living in a rural area may explain the higher satisfaction with hospice care found in this study. Finally, researchers should include open-ended questions for addressing problems as they occur and for further qualitative analyses, which will aid in development of patient- and familycentered interventions and measurements, to ensure hospice quality care.
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